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In July 2012, at the age of 38, I was given the devastating news that I had advanced ovarian cancer. This is my blog and the story of my fight to regain my health. I hope to share with you things that I've found helpful along my journey and keep you posted on my progress.

Introduction

There
can be no doubt that significant advances have been made in preventing,
diagnosing and treating cancer, but after decades of massive
investment, education and policy development, the outlook for cancer
patients remains very bleak and progress in finding a lasting cure for cancer seems painfully slow. Cancer is the number one fear of the UK public,
ahead of debt, knife crime and other worries [16] reflecting the fact
that cancer has such a devastating effect on so many lives; there can be
few people whose lives have not been touched by cancer in some way.

Average 5 and 10-year survival rates have improved slowly but steadily over the last 40 years [6] but there is a huge variation in survival rates for different cancers and recently survival rates for some cancers have got worse
[7]. While improving survival rates is generally good news (putting
aside for a moment the need for ongoing treatment and its side effects)
this does not directly translate to improved life expectancy, as part of
the improvement comes from earlier detection. So, if a cancer is
detected earlier, a person could still technically ‘survive’ for longer
even if the treatment failed to extend their life, as the survival
period is measured from the point of detection. Obviously early
detection is a good thing, as it should result in improved chances of
being cured, but as there is no foolproof method of confirming that
someone has been cured of cancer, we have no way of knowing how many
people have truly beaten the disease.

When it comes to
funding our treatment, while most of us are grateful that we have a
public funded health service to rely on in the UK, cancer can also still
result in significant financial difficulties for many, further adding
to the burden on cancer patients. Cancer charity Macmillan identified
that on average, 80% of cancer patients are hit with an average cost of £570 a month as a result if their illness
[3]. And, as public funded treatments have to be rigorously tried and
tested to demonstrate their effectiveness and value for money to the tax
payer, the dependency on public funded health care often results in
limited or delayed access to newer, more leading edge treatments that
may be available in the private sector.

the UK lags behind other European countries of similar wealth and performs worse than average

There
is also much to be dismayed about when we consider the UK’s performance
on cancer survival compared to other countries. Research has shown
that the UK lags behind other European countries of similar wealth and
performs worse than average. In January 2011, the government set out a
long term strategy aimed at improving the UK’s performance in a paper
entitled “Improving Outcomes: A Strategy for Cancer”
[4]. The strategy’s target is to bring the UK’s performance up to the
average level for Europe by 2015, which it estimates will save an
additional 5,000 lives a year.

The NHS spends around
£7bn a year on cancer, more than any other condition except for mental
illness. This is expected to grow significantly over time as more and
more people are ‘living with cancer’. An estimated 2.5 million people in the UK are now living with cancer,
up by 20% in the last 5 years [5]. This increase is largely due to
improvements in survival and detections, meaning that people are being
treated for longer.

an estimated 2.5 million people in the UK are now living with cancer

A
lot of excellent work is being done by scientists, doctors, charities
and politicians to improve the situation and the outlook is improving,
but more and more patients are living with the side effects of long-term
treatment and the escalating financial cost to the Tax Payer of
treating increasing numbers of patients for increasing periods of time
is unsustainable. The lack of real progress in overcoming cancer
after decades of research and billions of pounds of investment is
frustrating – cancer patients want and deserve better and policy makers
should do more to examine why progress is so slow.

As
a carer of someone suffering from ovarian cancer, a cancer with very
poor outlook and few treatment options, I have no medical experience but
I do have firsthand human experience of living with someone with
cancer. Based on this experience, I believe that opportunities are
being missed and cancer patients are losing out as a result. I would
like to suggest ten weaknesses with the current system for managing
cancer in this country; issues that, if addressed, could I believe make a
material difference to the prospects for all cancer patients:

Only ‘Big Profit’ Drugs Get Developed.

‘Aim Low’ Cancer Strategy Unlikely to Achieve Breakthrough.

‘Prevention Strategy’ not part of ‘Treatment Strategy’.

Culture of Defensiveness and Superiority.

Inadequate Focus on Environmental Causes of Cancer.

No Central Process for Access to Clinical Trials.

Excessive Burden of Proof for Harmless Treatments.

Flawed Measures of Success.

One-Size-Fits-All Treatments.

False Abandonment of Hope.

Each of these is explored in more detail in the
following sections, with an explanation of the perceived problems and
possible solutions.

Issue 1 - Only 'Big Profit' Drugs Get Approved

Problem

For
a new drug to be licensed and funded for use in the UK, it has to
demonstrate that it is clinically effective, safe and also cost
effective. This ensures that the NHS budget is allocated to drugs that
are most likely to work, given the expected costs and benefits.

To
demonstrate that a drug meets these criteria, it needs to go through
extensive research and clinical trials to produce the evidence required.
This can be a very costly process and drug companies invest hundreds
of millions of pounds to bring new drugs to market. The pharmaceutical industry claims that the average cost of bringing a single new drug to market is £1.2bn [9] but others claim that the true figure is only around £50m
[10]. However, whatever figure you believe, no commercial organisation
is going to risk this level of investment in research and development
for a new drug unless it can guarantee market exclusivity for that drug
if it gets approved, so that it can name its price and get an adequate
return on its investment. This is achieved by filing patents for the
drugs, which enable the drug companies to stake exclusive claim to them.

only
substances that can be patented, and therefore can produce a guaranteed
return on the investment, end up being developed into new drugs

The
consequence of this is that only substances that can be patented, and
therefore can produce a guaranteed return on the investment, end up
being developed into new drugs. Any substances that have clinical potential but no or limited profit potential, fall through the gap.

There
are numerous substances which have been identified as potential
candidates for cancer treatments, but which have not been developed for
use as they cannot be patented. These include existing low-cost drugs
used for treating other conditions (off-label drugs like artesunate [14 and metformin [15]]) and other natural and chemical compounds like high-dose vitamin C [11], ginger [12] and dichloroacetate [13].
There
seems like an enormous missed opportunity here and cancer patients are
being let down by a system which depends too much on commercial motives
rather than clinical opportunity. This seems morally incomprehensible
given the number of people who are suffering and dying from cancer every
year.

Potential Solutions

the problem could be addressed either by much greater public funded
independent research or by new incentive structures that reward the
private sector for investing in non-patentable treatments

It
is for policy makers to find solutions to this issue but the problem
could be addressed either by much greater public funded independent
research or by new incentive structures that reward the private sector
for investing in non-patentable treatments. Increased public investment
in R&D would also provide greater competition in drug development,
resulting in more cost reflective drug pricing and greater opportunities
to bring more drugs to market.

In addition, the
Government should look at overhauling the whole process of conducting
clinical trials, as the high cost of putting a drug through clinical
trials represents a significant barrier to entry for new drugs.
While it is important to have robust evidence, it is counter-productive
if the sheer cost of producing this evidence results in the exclusion of
drugs that have clinical potential but are unlikely to generate
sufficient income to recoup the costs of the trial process.

Issue 2 - 'Aim Low' Cancer Strategy Unlikely to Achieve Breakthrough

Problem

The UK Government has recognised
that the UK’s performance in managing cancer is well below par compared
with other European countries and it has developed a strategy to improve cancer outcomes.
The Strategy aims to improve survival periods by focusing on measures
to help prevention, earlier detection and improve treatment. This is
all very laudable and worthwhile but it is simply not enough.

The strategy focuses only on incremental improvements with a mediocre
target of bringing the UK up to the average performance for Europe. By doing so it hopes to reduce cancer deaths by 5,000 a year within 5 years; that is an improvement of just 3% in 5 years.
There will be no prospect of a breakthrough in the battle against
cancer while our aim is to do no better than other countries are already
doing! And meanwhile, other countries will have invested more, set
more ambitious targets and forged even further ahead of the UK.

Potential Solutions

The
Government needs to set far more ambitious targets that reflect the
growing impact that cancer is having on millions of lives

Research
shows that cancer is the number one fear of the UK public. This needs
to be reflected in the priority it is given in the Government’s plans.
While it is good practice to improve the way we do things now, we also
need to find new ways of doing things. The Government needs to set far
more ambitious targets that reflect the growing impact that cancer is
having on millions of lives. It needs to give cancer a much higher
priority, invest more and develop a strategy that could make a material
difference by tackling cancer from new angles and examining what is
blocking progress, rather than simply making a marginal improvements to
existing processes. There is clearly a mismatch between government
priorities and public opinion when the UK Government declares its
ambition to become a world leader in driverless cars but only has an
ambition to be an average performer in Europe for preventing and
treating cancer.

Issue 3 - 'Prevention Strategy' not part of 'Treatment Strategy'

Problem

hospitals
offer patients sugary drinks, sweets and salty snacks while patients
are having their chemotherapy; feeding the cancer at the very moment it s
being treated

Decades
of research have shown that there are many factors within our control
that cause or promote cancer. We know this now more than ever.
Lifestyle choices we make, our diets and how we take care of our health
in general have all been shown to contribute to a biological
environment conducive to cancer growth [17]. The Government and
cancer charities spend large amounts of time and money educating us
about measures that we can take to reduce our chances of getting cancer
but, in my experience, none of this good advice finds its way into the
treatment plans for patients. It’s as if the team working on improving
‘cancer prevention’ have no communication with the team working on
‘cancer treatment’. Most cancer patients are desperate to do what they
can to help improve their prospects but at no point during the treatment
consultations that my wife and I had did anyone offer us any advice on
lifestyle and diet choices that could be taken, which might discourage
cancer growth. As a blatant example of how incongruent the strategies
for Prevention and Treatment are, hospitals offer patients sugary
drinks, sweets and salty snacks while they are having their
chemotherapy; feeding the cancer [18] at the very moment it s being treated! This is clearly a case of left hand not talking to the right.

Potential Solutions

The
first thing that needs to change is to recognise that many patients
want to play a greater role in their treatment and do things that may
improve their prospects. We cannot expect to handover our medical
dilemmas to doctors and for them to solve them all for us. We have to
take responsibility for our own health too and many patients are keen to
do this, given the chance and a little help.

Professor Robert Thomas, a consultant oncologist and Cambridge University lecturer, has written a book called “Lifestyle and Cancer“,
which summarises lifestyle and diet choices which have shown solid
evidence of their impact on cancer [19]. A good start would be to take
these recommendations and turn it into practical handouts for patients.
This would cost very little and give patients somewhere to start. But a
longer term strategy would be to move towards more Integrative Cancer
Treatment that combines conventional treatments with other synergistic
strategies to support physical and mental health into personalised
treatment plans that result in the doctors and the patients working as a
team towards a shared goal.

Issue 4 - Culture of Defensiveness and Superiority

Problem

There
seems to be an unwavering belief that existing processes can’t be
bettered and that the NHS has the best treatment available for you,
regardless of what may be on offer privately, through alternative
medicine or from hospitals and clinics in other countries

The
slow progress towards finding a lasting cure for cancer can partly be
attributed to the difficulty of the challenge but it is also a symptom
of a lack of innovation. Lord Saatchi recently described current cancer
treatments as “the endless repetition of a failed experiment”
[21], with only 5.6% of UK cancer patients receiving an innovative
treatment. His attempt to introduce a new law to improve innovation in
medical treatment (the “Medical Innovation Bill” [23]), was thwarted by people convinced that the status quo was better.

Lack of innovation often goes hand in hand with a culture of defensiveness, prejudice and reluctance to change
and even as someone on the periphery of the medical system, it is not
difficult to see that this is very much the case in the UK. There seems
to be an unwavering belief that existing processes can’t be bettered
and that the NHS has the best treatment available for you, regardless of
what may be on offer privately, through alternative medicine or from
hospitals and clinics in other countries. No amount of evidence can
overturn this belief unless it has come from official NHS approved
sources.

Potential Solutions

Making
any sort of change in culture is a long and difficult job but it must
start by senior government officials accepting that there may be
different and better ways of doing things. This message needs to filter
down through policy makers, senior management and doctors and into new
laws and regulations that encourage and support innovation.

There
also needs to be greater freedom and autonomy for doctors to make
recommendations based on information and evidence outside of the NHS.
Doctors should be apprised of international developments, clinical
trials and treatment options, so that this information can be passed on
to patients. During our treatment consultations we were never advised
abut treatment options that may exists outside of the NHS. With so few
treatment options available in the UK we wanted more information about
clinical trials and studies into new treatments abroad.

In
a world where people can communicate and move freely across the globe,
it is no longer acceptable to ignore or discount treatment options that
people may have internationally or in the private sector simply because
they are not recommended by the NHS. Other healthcare providers could,
and often do, offer better solutions and the NHS should not blindly
discourage any treatment outside of the NHS.

Issue 5 - Inadequate Focus on Environmental Causes of Cancer

Problem

many cancer causing agents are permitted for everyday use and form part of the products and services we regularly use

Cancer
is not just an individual problem and responsibility. It is right that
we should take personal responsibility for choices that we make that
affect our health, but we depend on the Government, regulatory bodies
and employers to protect our health where choices are made for us. How
clean the air is, how healthy and safe our food and water is, how much
stress we are put under at work – all of these things are environmental
issues that influence cancer but are things that individuals can do
little to affect. It may be surprising to some, but there is a list of cancer causing agents, or carcinogens as they are known
[20]. Lab tests have proven that all of these things cause cancer.
So, it is hard to believe that many of these cancer causing agents are
permitted for everyday use and form part of the products and services we
use every day.

With cancer incidence rates rising by
more than can be explained by increasing life-expectancy, it seems
highly likely that environmental factors are playing an increasing role
in causing cancer, but the finger of blame is almost always pointed at
individuals, citing smoking, obesity and alcohol as the main issues,
despite improvements in some of these areas. The finger of blame is
rarely pointed at governments and businesses to encourage them to
regulate for, use and generate fewer cancer causing agents.

Potential Solutions

More
research should be carried out into the use of and generation of
carcinogens through manufacturing processes and by the products and
services we regularly use, with a view to implementing increased
regulation to better protect the public from harmful effects outside
their control.

Statistics should be analysed to
determine how much environmental factors are contributing to overall
increases in cancer incidence rates, so that the problem can be
understood and managed.

Issue 6 - No Central Process for Access to Clinical Trials

Problem

Cancer
patients with very limited treatment options are often forced to
consider trying new drugs that are being tested in clinical trials.
Such new drugs offer the possibility of improved outcomes but come with
greater risks as their effectiveness and side-effects are less well
understood.

In the UK there are dozens of clinical
trials going on at any one time across different hospitals and patients
can apply to participate in trials anywhere in the country, not just at
their nearest hospital. This fact alone is not well understood by
patients.

When a patient has few options, they need to
know about all the options available to be able choose a treatment plan
that is best for them. However, there does not seem to be a centralised
system for supporting patients in making this decision and doctors do
not seem to be fully aware of all the trials taking place at other
hospitals.

Patients have to do their own research to try to identify trials that they may be eligible for in other parts of the country

Patients
have to do their own research to try to identify trials that they may
be eligible for in other parts of the country; a task which is difficult
for even the most medically literate of patients. We identified a
clinical trial that my wife qualified for at our local hospital,
although were not told about this by the hospital where she was being
treated. There does not even seem to be a centralised website listing
all clinical trials available in the UK; at first glance the Cancer
Research UK website appears to offer this but we were advised by my
wife’s oncologist that some trials may be excluded as the website only
covers trials supported by the Cancer Research UK charity.

Potential Solutions

The NHS should develop
and provide a centralised, independent system for doctors and patients
to identify and select relevant clinical trials within the UK. This
should include all trials being undertaken as well as those which have
been approved but not yet started. Patients should be told how they
can get access to the information about all clinical trials available to
them.

Doctors should investigate all the clinical
trial options available across the country before making recommendations
to a patient. Where patients have few options or only options that
offer little chance of success, doctors should also research relevant
clinical trials that are taking place internationally and the Government
should consider providing assistance to patients seeking to participate
in clinical trials abroad.

harmless,
low-cost dietary supplements with cancer fighting potential have to
undergo the same rigorous and costly clinical trials as a highly toxic
new drug; so as a consequence, none are ever recommended, as nobody is
willing to fund the cost of producing the evidence

However,
the NHS position on complementary and alternative treatments is to
reject them all due to lack of evidence - nothing is recommended to a
patient unless there is substantial evidence to support it. Of course the lack of evidence doesn’t prove that they don’t work, only that nobody has found the money to prove whether they do or not.
Even harmless, low-cost dietary supplements with cancer fighting
potential have to undergo the same rigorous and costly clinical trials
as a highly toxic new drug; so as a consequence, none are ever
recommended, as nobody is willing to fund the cost of producing the
evidence (as there is no commercial benefit in doing so). So, promising
complementary treatments that could help a patient are never
recommended, even though they may involve very low risk and cost to the
patient and the NHS

Potential Solutions

Harmless and low cost
treatments should not be subject to the same onerous burden of proof as
expensive and toxic drugs with lots of side effects. Patients should be
told about treatments that have shown some evidence of helping with
cancer, as long as it has not been proven that they don’t work. Doctors
should also avoid using the “no evidence” justification for rejecting
complementary and alternative treatments out of hand, as many do have
some evidence of success, just not the quantity and quality of evidence
currently sought before recommending a treatment.

There is already a recognised list of cancer causing substances (carcinogens)
[20], broken down into categories based on the amount of evidence that
exists supporting the fact that these substances are in fact
carcinogenic. A similar list could be produced for low risk, low cost
cancer fighting substances; natural and non-prescription substances
where there is some evidence that they can help to treat cancer. This
list would cite varying levels of confidence depending on the amount of
evidence available e.g.

Substantial evidence

Some credible evidence

Reasonable to believe

Some limited evidence

Issue 8 - Flawed Measures of Success

Problem

When
politicians and healthcare managers quote our performance as a country
in tackling cancer they tend to look for a headline measure of success.
The most commonly used measure of success for cancer treatment is the
5-year survival rate. This measures the percentage of people diagnosed
with cancer who live at least 5 years after being diagnosed.

There are several problems with this way of measuring overall success:

it does not measure how many people have been cured, only how many live for 5 years

increased survival periods don’t necessarily equate to increased
life expectancy, as earlier detection can simply mean that people are
living with cancer for longer, not necessarily living longer

it ignores the consequences of ‘success’ – the negative effects on patients’ quality of life

it is too short term – most people would not view living for 5 years as “success”

it masks the wide variation in survival rates for different cancers

patients needing treatment for longer than 5 years risk being seen as less of a priority

it places a disproportionate focus on diagnosis and treatment
rather than prevention as it ignores increases in the number of people
getting cancer

There is a saying in business management that if you are not
measuring it then you are not managing it. It is very true that what we
measure is what we focus on, so with the 5-year survival rate as our
headline measure, we inevitably focus most on increasing the percentage
of people who live 5 years or more. This isn’t a bad thing on its own
but it means that we are not focussed enough on finding a lasting cure
for cancer; we are instead focused on finding treatments that will
extend lives in the short-term, regardless of the consequences.

Potential Solutions

A more appropriate
headline measure of success is long-term remission or cure. There is
currently no reliable means of determining if someone has been cured of
cancer. Current detection techniques are inadequate and fail to detect
minute cancer cells that can remain after initial treatment, which can
lead to a cancer reoccurring. This probably hampers progress towards
developing a cure, as it cannot be proven that someone has been cured.

headline
cancer statistics should measure longer survival periods and take into
account the impact treatments have on patients’ quality of life

As
a long-term initiative, the Government should consider investing more
money in developing better detection and diagnostic techniques, which
are able to confirm with greater certainty that a cancer no longer
exists.

In the short-term, alternative headline cancer
outcome statistics should be considered, which use longer survival
periods, that better reflect patient’s aspirations, and which include a
weighting or adjustment to reflect the impact treatments have on
patients’ quality of life.

Issue 9 - ‘One-Size-Fits-All’ Treatments

Problem

The
current clinical trial system for testing new drugs validates a new
drug’s effectiveness by checking it works for a group of people with the
same type of cancer. Once this has been confirmed and the drug has
been approved and funded, it will be made available to people with the
type of cancer it was tested against.

As clinical
trials are very expensive, it is usually not possible to conduct narrow
tests of specific sub-types of a cancer, so patients with the same
cancer are usually put into the same group and an average response rate
is determined for this group. This results in the development of
one-size-fits-all treatments for people with that type of cancer, with
the ‘best’ treatment being offered as standard (often called the ‘Gold
Standard’) for that type of cancer.

although
the average response rates across large numbers of people are
reasonably predictable, there can be wide variations in response rates
across different patients

In practice, when the
treatments are given to patients, although the average response rates
across large numbers of people are reasonably predictable, there can be
wide variations in response rates across different patients; some
patients respond to a treatment less well than others and in these
situations another treatment could have been a better for them than the
‘Gold Standard’. This suggests that there are other factors that
influence how effective a treatment is and that research needs to focus
on smaller sub-groups of a cancer or even personalised treatments based
on the tumour profile of individual patient.

There is
also a presumption that all patients being offered the Gold Standard
treatment are happy with the risks and benefits of the treatment
compared with the risks and benefits of other treatments that performed
less well on average. It could be that a patient is prepared to
consider a treatment that is less likely to work but if it did is more
likely to have a lasting effect. These sorts of patient interests are
not considered in the one-size-fits-all treatment decisions.

Potential Solutions

To make drugs more
personal to the patient and improve consistency of response rates for
drugs within their target audience, drugs should be tested against
narrower sub-types of cancer. This is probably not financially feasible
given the high costs of the current clinical trial system for testing
new drugs, so would depend on changes to the clinical trial system to
facilitate cost effective research of new drugs aimed at smaller target
audiences.

There
should be a progressive move towards more personalised treatments,
taking into account the individual tumour profile of the patient

There
should also be a progressive move towards more personalised treatments,
taking into account the individual tumour profile of the patient.
Tumour sensitivity testing in the lab can determine how well a person’s
tumour may respond to different drugs and should be used to help in
selecting the best drugs to use. This is already common practice at
some cancer clinics in other parts of the world and while there is no
guarantee that lab-testing results will mirror real-life results, this
data is at least personal to the patient and over time results can be
accumulated to gain greater confidence in using personal lab-testing as a
predictor of drug success.

Issue 10 - False Abandonment of Hope

Problem

Breaking the news to someone that they have cancer is not a job anyone relishes but sadly over 250,000 people a year in the UK have to be given this devastating news every year
[27]. However, it is important that a cancer diagnosis is communicated
for what it is, simply a diagnosis, and not a death sentence. All too
often we read or hear about people being told they have “x months to
live”. My wife was told this shortly after she was diagnosed – she was
told she probably had between 3 and 5 years to live, but 8 at the most.

While
patients deserve to be given the facts about their prospects, it is
vital that doctors communicate clearly what the statistics mean and
don’t overstate their meaning. Average statistics from the past can be
quoted as a guide to possible future outcomes but abandonment of all
hope is inhuman and unjustified. There have been many cases of people
claiming to have recovered from incurable cancer – miracles can happen
and no doctor should tell someone when their life will end.

In
Australian Aboriginal culture there is a practice called “pointing the
bone”, where people believed that if a Kudaithca, a ritual executioner,
pointed a bone at you then you would die. So strong was this belief
that it caused an emotional response that did indeed trigger some form
of psychosomatic death. While this may be an extreme example, when
someone you trust and respect tells you are going to die, this can have a
very powerful effect on you.

Potential Solutions

Better guidelines
should be given to doctors on communicating a cancer prognosis,
particularly where the prognosis is bleak. While people shouldn’t be
given unrealistic expectations, it is critical that doctors never put a
finite time limit on someone’s life, as this is effectively imhuman and
is only likely to accelerate the patient’s demise. Miracles can happen [25] - there is no such thing as false hope, only false abandonment of hope.

About The Author

My name is John Piears and this article is based on the experiences of me and my wife Beata.

I
met Beata, in 2011 but in 2012 our happiness was cruelly snatched away
from us when Beata was diagnosed with advanced ovarian cancer. She was
only 38 at the time, much younger than the average age of 63 for this
type of cancer.

Unfortunately there are very few
treatments available for women with advanced ovarian cancer and Beata
was told that the treatments on offer through the NHS could only extend
her life by a few years at most. She has already had major surgery and
twelve months of gruelling chemotherapy but her cancer is still growing
and has now become resistant to some of the drugs.

Over
the last two and half years, I have supported Beata as she has battled
her disease and this article attempts to provide thoughtful observations
and practical recommendations based on the cancer care we have
experienced, both in the UK and abroad.

Beata is still
battling her disease and is currently raising money for innovative
treatments available in specialist cancer clinics abroad that are not
covered by the NHS. You can find out more about Beata’s story and her
fundraising appeal at www.MidLifeCancerCrisis.com.

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